In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, is defying the odds and not only living, but thriving and loving his life. This is an effort to share his joy in his journey. Like the little purple pansy, he is tiny, but strong and brightens his corner of the world. If you'd like to see more pictures and his story from April 2010 to March 2011, go to Http://www.carepages.com/carepages/GiftfromHeaven

Monday, September 21, 2015

Sleep...

He's FINALLY sleeping. This kid has been having a party since he got here. Like, he'll sleep for an hour or so, and then play for several more! Until last night, he probably only has slept about eight hours since we got here Friday morning.

Yeah, exhaustion anyone?

And when he's awake, or tired, he uses more oxygen. Once he was sleeping soundly, we made good progress.

He woke briefly this morning when his nurse did his food and his medicines, played for a couple minutes, and is back out again. I think he may sleep most of the day.

We're also probably going to the floor today. He's on his oral antibiotic instead of IV. It looks like our old buddy, pseudomonas, has gotten out of hand. He's been colonized with it for years, but every so often, it gets out of control and causes problems.

So now we just have to get his oxygen under control and everything should be good.

Follow us on Facebook

Follow by Email

A Thousand Words...

There Can Be Miracles

Little Purple Pansies

Little purple pansies, touched with yellow gold,Growing in one corner of the garden old;We are very tiny but must try, try, tryJust one spot to gladden, you and I.

In whatever corner we may chance to grow,Whether cold or warm the wind may ever blow,Dark the day or sunny, we must try, try, tryJust one spot to gladden, you and I.

What is Trisomy 18?

Trisomy 18, also known as Edwards syndrome, is where a child has three of the 18th chromosome. Most people have two of each chromosome, one from mom and one from dad. In a trisomy, the child gets two of one chromosome from one parent and one from the other. Think tricycle, three.

Imagine if you made a batch of cookies and it called for two cups of sugar. Sugar is good, it's necessary for the cookies to turn out the way you expect them to. But instead, you put in three cups. You then proceed to mix and bake the cookies.

They're not going to be the way you expect, and it's the same way for that extra chromosome. Our bodies don't "read" the code well when there's an extra portion added in, and it causes all kinds of complications.

But just like "typical" children, there is a wide range of abilities and challenges for children with a trisomy. Many of the anomolies occur along the mid-line: the brain, the mouth (cleft lips and palates) the heart, lungs, diaphragm, and kidneys. Some are more severe than others.

Each child is unique, each is special. I like to use the sugar in my analogy because each one child is so sweet. In our home, we say that the 18th chromosome holds the secret to love. Aaron got an extra love chromosome, and he uses it to bless our lives.